Who Owns My Health Data?

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Key Takeaways

  • The ever-increasing volume of digital health data presents new opportunities for clinical research and also presents new challenges for managing personal health information.
  • High profile data breaches have heightened consumer sensitivity and awareness around who owns, who uses, and who buys and sells consumer information.
  • Although HIPAA regulations provide some sort of a framework for health data usage, they do not include language around data aggregation or data monetization.
  • To fully realize the potential of the incredible amount of data available today, researchers must align patient priorities with scientific priorities and engage with patients throughout the development continuum.

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